Archive for the ‘Fundraising’ Category

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180 Guests Enjoy Ball with Annabelle Griffin & Ehlers Danlos Support UK

Posted on June 30, 2014

Annabelle’s charity continues to garner support and raise awareness of Ehlers-Danlos Syndrome (EDS). By Saiqa Chaudhari.   “A GLITTERING ball saw 180 guests raise more than £3,000 for a charity which aims to “make the invisible visible”. Brandlesholme charity Annabelle’s Challenge hosted the glamorous event at The Village Hotel in Bury in aid of national organisation EDS UK. The […]

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2nd Annual Chiari Walk

Posted on June 27, 2014

The 2nd Annual Chiari Syringomyelia Foundation “Unite@Night” Walk was held June 27, 2014 in Charlotte, NC. Most people who suffer from Chiari or syringomyelia will tell you: their conditions are not simple. Often, there exists a wide array of related disorders, including idiopathic intracranial hypertension (IIH), hydrocephalus, Ehlers-Danlos Syndrome (EDS), and dysautonomia, just to name a few. […]

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Annabelle Inspires New National Charity in the UK

Posted on May 28, 2014

This 5 year old young lady is campaigning with her parents Sarah and Jared Griffin for EDS Awareness and Research funding. The UK has a new charity with a brave little girl from Bury at its heart. Five-year-old Annabelle ‘AJ’ Griffin suffers from Vascular Ehlers-Danlos Syndrome (VEDS), the most serious form of Ehlers-Danlos Syndrome (EDS). The […]

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Schoolgirl Raising Awareness of Ehlers-Danlos Syndrome

Posted on May 24, 2014

Many children and adults are doing activities in May to promote EDS Awareness. Written by JORDAN DAY A zebra themed day was held at Mepal and Witcham Primary School to raise money awareness for Ehlers Danlos Syndrome (EDS). Pupil Jess Johnson has the disorder and she is pictured with mum Donna. “A little girl who […]

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Sled Hockey Team Includes Players with Ehlers-Danlos

Posted on April 5, 2014

Pennsylvania athletes with Ehlers-Danlos are hooked on Sled Hockey. The team will travel to Boston to participate in the Disabled Hockey Festival. Teammates enjoy being able to play a sport without having to think about their disability. By Eric F. Epler Don’t let the perfectly-pink color scheme of Anna Lehman’s sled fool you. When the 16-year-old athlete […]

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Tri-Athlete Continues to Compete Despite Hypermobility

Posted on April 4, 2014

This determined British man competes in triathlons despite his disorder. Geoff spreads awareness for the UK Hypermobility Syndrome Association.  “GEOFF Render has defied doctors after making a remarkable recovery from an accident during a gruelling triathlon. And this summer he will tackle THREE triathlons on his adapted trusty trike and will even attempt the same tough […]

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Hard Budget Choices for Research of Rare-Disease Cures

Posted on March 21, 2014

Difficult decisions need to be made on how to spend research money for “rare diseases”, such as Ehlers-Danlos Syndrome. This NIA study – which began in 2003 –  focuses on 5 disorders, including Ehlers-Danlos and Marfan syndromes. By AMY DOCKSER MARCUS BETHESDA, Md.—Last month, at the National Institutes of Health clinical center here, Sarah Kucharski and Fran […]

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Surgery helps some Ehlers-Danlos patients; but multi-systemic effects remain

Posted on March 16, 2014

This is a remarkable story about Kelly Koep, a young lady with Ehlers-Danlos Syndrome, who is beating the odds. Her surgeon, Dr. Fraser Henderson, is still taken aback at the extent of the disabling conditions he sees in more than 500 EDS patients. EDS expert, Dr. Clair Francomano, says, “There’s a lack of knowledge in the medical community about […]

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